After six years of pushing for an assessment my soon to be 12 year old son has two half an hour appointments to complete his ADOS tomorrow afternoon. What can we expect? He doesn't usually say anything in hospital/doctors appointments. Will this be difficult? We saw CAMHS last week and both the health professionals that we saw said that it was 'glaringly obvious' that my son is 'on the spectrum'. Both a Paediatric Consultant and an Educational Psychologist in the last two months have suggested Asperger's as the most likely diagnosis. I think I am more nervous than he is!

8 Replies

Hi Abi, just seen your post. Please do not worry about ADOS test, it will be fine, my youngest did ADOS, and was diagnosed a few years ago with Autism. I have Asperger Syndrome and also sat ADOS and my eldest son is on the lost waiting for ADOS too, he's 12.

Basically, what will happen, is that you and your son will go into a room with Paediatricians and it is very relaxed atmosphere. One will do role play scenarios, a puzzle and an exercise with a picture book where she/he will tell a part of the story using the pictures and will ask your son to try to tell some of the story in his own words. The other Paediatrician will be scoring based on responses, behaviour, communication and social interaction etc.

The ADOS tool is not used to diagnose but it is a useful asset when building a case for diagnosis. The Paediatricians will use the ADOS evidence, together with anything that you have contributed in terms of information, school report and any Ed Psych reports, and the observations of the Paed in previous consultations.

They will use all evidence to work out if he is on the spectrum. They use the latest DSM5 criteria which I personally believe is the best criteria as yet because it now includes sensory which from my experiences, I believe is crucial. If your son gets a diagnosis, it is now called Autistic Spectrum Disorder, they no longer give diagnosis of 'Asperger Syndrome'.

I hope this helps a little in knowing what to expect. Please don't worry, it will be OK and it is a calm atmosphere, there's no pressure.

Message back if you need anymore info or support, I've got a wealth of knowledge and a lifetime of experiences as well as on my son's part, where it 'all went wrong' at school and I ended up in a 2 year battle due to discrimination and illegal exclusion, right through to court case etc (that I won, yay).

Just be there for him and be his voice, that's the main advice I have. A mother knows their child better than any professional so if the outcome after ADOS isn't fitting your gut instinct, then keep fighting.

Thank you Claire that is such a supportive and helpful reply. Well Jethro and I arrived at the hospital on Monday only to be told that the appointment had been cancelled! We had already had a previous appointment cancelled in July and when we received a letter to say that Jethro had a follow up appointment in September I phoned the consultant's secretary to confirm that the 3rd August was still on and she said not to worry and that yes it was going ahead and that the September appointment would be for us to get results.

They are now saying that Jethro is not only a new patient and hasn't seen the team before (he has been seeing the same consultant on and off since 2009) They say that the child development department can not help as he is 11 years old and that we need to see CAMHS for a diagnosis.

I feel like we are going round and round in circles! I managed to get to speak to the consultant as she happened to be in the office when we arrived and certainly expressed my anxieties and frustrations but she was just very vague with her answers!

When we got home I emailed the Paediatrician who is the head of the team who Jethro managed to see privately in May (my Mum offered to pay as school was going so badly, Jethro was having terrible meltdowns at home and no-one knew how to help him) He is happy to confirm alongside the EP report that Jethro has Asperger's Syndrome and if CAMHS are happy to go along with this we have a diagnosis. As I said we saw CAMHS last week and they said that it was 'glaringly obvious' that Jethro was 'on the spectrum'. I don't know how this will leave us from the point of evidence for an EHC and funding? What nonsense!!

Omg Abi, that is absolutely ridiculous what you are going through but I have to say that it is not surprising at all,basically the NHS Community Paediatrics are very over stretched and are struggling to see the huge number of children that are being referred and as a result, children are being directed to CAMHS (who are qualified to diagnose) but half the time, don't do the diagnosis

I'm just off to Paediatricians now and to Audiology but when I get back in going to message you back some more because I think you are being fobbed off so will give you a few more ideas and tell you more about EHCP plans and what to do.

I rang the mental health nurse that we saw last week to let her know what was happening and she said that Jethro would have to be treated as a new patient so will be on a waiting list. I asked her whether we could go privately for a diagnosis and she advised that it wouldn't be seen as evidence for the EHC. I am meeting her on the 17th to complete all the paperwork for an ADOS and the soonest he could be seen is probably Dec/Jan. I look forward to hearing from you later. I hope your appt goes well today. Speak later x

Hi Abi, I'm afraid I don't have any advice but we're on the waiting list for an ADOS assesment for my 11yr old son via CAMHS too. So far his case worker thinks its perhaps just traits but his anxiety and control issues are needing worked on whether he gets a diagnoses or not.

Good luck and I'll be interested to hear how your son and you get on x

Thank you for your reply. How long have you been waiting for an assessment for your son? As you can see above we didn't even get as far as an assessment on Monday. All terribly frustrating! Good luck and hope you get more joy than we did. Best wishes Abi x

Hi Abi we had been waiting a while for him to be seen by CAMHS not initially to do with ASD but because of his anxiety and poor self image.

He was eventually seen by a psychologist who wasn't overly concerned. He then had I suppose we'd call it a mental health crisis, it was very distressing and I won't go into the details but the gist of it is he was having suicidal ideology and 'pseudo hallucinations' they said it was and needed immediate psychiatric attention.

I really wish it hadn't got to that stage for him and he has stopped hallucinating during the day now. It's 10 days until he's back at school and his anxiety is increasing again. He's just on half days at the recommendation of CAMHS for now because I couldn't get him to go to school even after changing schools.

The assesment is at CAMHS doing because three of their psychiatrists he saw during that time said it could be a sensory processing issue.

Hi Abi, I was just looking at this page again and wondered how you and your son were getting on?

My son still hasn't been seen yet but his nurse at CAMHS has seen him a lot since and says she thinks he is most likely on the spectrum but because we've always naturally done social preparation with him because he's always had meltdowns when overwhelmed it's been masked so far.